I've had rheumatoid arthritis since 1992, but it wasn't until I joined Patient Partners in Arthritis that I heard about Cochrane. Five years into my disease, I had long since stopped waiting for a magic bullet to come along to fix me and had started taking my medication armamentarium a lot more seriously. I turned to Cochrane to give me the straight goods on the ever changing list of medications that were tried. The reviews on medications and other treatment modalities were so very helpful, and I trusted them because they were evidence based. As a Patient Partner you work with medical students, residents, some family doctors and other health care practitioners and they were always interested when I asked if they knew about Cochrane.
But it's only in recent years that I have wandered off the musculoskeletal path and into the murky world of Alzheimers and dementia. My mother has had Alzheimers for the last 15 years. In the first number of years there were lots of doctors and tests and medications to try, but most of the time I was just running as fast as I could to stay a step or two ahead of the changes that were happening. For the last 4 or 5 years, she has lived in long term care in the limbo that is the late stages of the disease, so I can no longer ask her how she's doing, or if she's comfortable, or if she's content or hungry, or tired and most importantly, if she's in any pain. She's lost the ability to verbally communicate, and she is blind now as well. So I turned to Cochrane again to read more about dementia and Alzheimers and found a wealth of knowledge, particularly about music and dementia.
I was so appreciative of what I learned, that on the suggestion of a dear friend who is deeply involved in CCNet and Cochrane, I volunteered to comment on Cochrane Protocols and Cochrane Reviews for the Dementia and Cognitive Improvement Group. I sometimes find myself getting caught up in the protocol or review to the point that I have to start reading it over again with the perspective of providing my comments. Even more so than when I read MSK reviews for myself, I find an indescribable comfort in the knowledge I gain. The studies in the ALOIS database pertaining to personalized music were such a find for me, and now I have an iPod (courtesy of the Alzheimer Society of Toronto), a set of headphones, a splitter and a pair of ear buds and I can sit for a couple of hours on a Sunday afternoon and share the music my mother always loved and taught me to love, with her. There is clearly a bond, and a connection between us that becomes evident and powerful when the headphones go on. This journey hasn't been easy, neither for myself and RA or for my mother and Alzheimers, but having and trusting a great resource such as the Cochrane Library, has absolutely made the journey a less bumpy road to travel.
- Submitted to Cochrane Canada via online portal